Open Access Research Prevalence and factors associated ... · Lynn Kemp,8 Cheryl Dissanyake,9...

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Prevalence and factors associated with parental concerns about development detected by the ParentsEvaluation of Developmental Status (PEDS) at 6-month, 12-month and 18-month well-child checks in a birth cohort Susan Woolfenden, 1,2 Valsamma Eapen, 3,4,5 Bin Jalaludin, 5,6,7 Andrew Hayen, 7 Lynn Kemp, 8 Cheryl Dissanyake, 9 Alexandra Hendry, 10 Emma Axelsson, 3,5,11 Bronwyn Overs, 3 John Eastwood, 12 Rudi C ̌ rnc ̌ ec, 3,13 Anne McKenzie, 14 Deborah Beasley, 15 Elisabeth Murphy, 15 Katrina Williams, 16,17,18 on behalf of the Watch Me Growstudy group To cite: Woolfenden S, Eapen V, Jalaludin B, et al. Prevalence and factors associated with parental concerns about development detected by the ParentsEvaluation of Developmental Status (PEDS) at 6-month, 12-month and 18-month well-child checks in a birth cohort. BMJ Open 2016;6: e012144. doi:10.1136/ bmjopen-2016-012144 Prepublication history for this paper is available online. To view these files please visit the journal online (http://dx.doi.org/10.1136/ bmjopen-2016-012144). Received 5 April 2016 Revised 12 July 2016 Accepted 19 August 2016 For numbered affiliations see end of article. Correspondence to Dr Susan Woolfenden; susan.woolfenden@health. nsw.gov.au ABSTRACT Objectives: Early identification of developmental vulnerability is vital. This study aimed to estimate the prevalence of moderate or high developmental risk on the ParentsEvaluation of Developmental Status (PEDS) at 6-month, 12-month and 18-month well-child checks; identify associated risk factors; and examine documentation of the PEDS at well-child checks. Design, participants: A prospective birth cohort of 2025 children with 50% of those approached agreeing to participate. Demographic data were obtained via questionnaires and linked electronic medical records. Telephone interviews were conducted with parents to collect PEDS data. Primary and secondary outcomes: Multiple logistic regression analyses identified risk factors for moderate or high developmental risk on the PEDS.A Cumulative Risk Index examined the impact of multiple risk factors on developmental risk and documentation of the PEDS at the well-child checks. Results: Of the original cohort, 792 (39%) had 6- month, 649 (32%) had 12-month and 565 (28%) had 18-month PEDS data. Parental concerns indicating moderate or high developmental risk on the PEDS were 27% (95% CI 24 to 30) at 6 months, 27% (95% CI 24 to 30) at 12 months and 33% (95% CI 29 to 37) at 18 months. Factors associated with moderate or high developmental risk were perinatal risk (OR 12 months: 1.7 (95% CI 1.1 to 2.7)); maternal Middle Eastern or Asian nationality (OR 6 months: 1.6 (95% CI 1.1 to 2.4)), (OR 12 months: 1.7 (95% CI 1.1 to 2.7)); and household disadvantage (OR 6 months: 1.5 (95% CI 1.0 to 2.2). As the number of risk factors increased the odds increased for high or moderate developmental risk and no documentation of the PEDS at well-child checks. Conclusions: Children with multiple risk factors are more likely to have parental concerns indicating developmental vulnerability using the PEDS and for these concerns to not be documented. Note that the Child Health Nurses in this paper that are referred to are called Child and Family Health Nurses in the State in Australia where this research was undertaken. BACKGROUND Although 4% of Australian children start school with an identied developmental disorder, a further 18% exhibit subtler developmental difculties (developmental vulnerability)lacking the necessary skills to Strengths and limitations of this study This is the first study to examine the impact of cumulative risk on developmental vulnerability in children under 2 years in an area of socio- economic disadvantage and cultural diversity. This is the first study to examine the impact of cumulative risk on documentation of the PEDS at 6-month,12-month and 18-month well-child checks. Strength of this study was the use of data linkage with the mother and childs electronic medical record. Significant loss of follow-up of mothers and infants from the time of recruitment at birth to the 18-month follow-up. Maternal mental health was unable to be exam- ined due to missing data in the electronic medical record (EMR). Woolfenden S, et al. BMJ Open 2016;6:e012144. doi:10.1136/bmjopen-2016-012144 1 Open Access Research on December 15, 2020 by guest. Protected by copyright. http://bmjopen.bmj.com/ BMJ Open: first published as 10.1136/bmjopen-2016-012144 on 8 September 2016. Downloaded from

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  • Prevalence and factors associated withparental concerns about developmentdetected by the Parents’ Evaluationof Developmental Status (PEDS)at 6-month, 12-month and 18-monthwell-child checks in a birth cohort

    Susan Woolfenden,1,2 Valsamma Eapen,3,4,5 Bin Jalaludin,5,6,7 Andrew Hayen,7

    Lynn Kemp,8 Cheryl Dissanyake,9 Alexandra Hendry,10 Emma Axelsson,3,5,11

    Bronwyn Overs,3 John Eastwood,12 Rudi Črnčec,3,13 Anne McKenzie,14

    Deborah Beasley,15 Elisabeth Murphy,15 Katrina Williams,16,17,18 on behalf of the‘Watch Me Grow’ study group

    To cite: Woolfenden S,Eapen V, Jalaludin B, et al.Prevalence and factorsassociated with parentalconcerns about developmentdetected by the Parents’Evaluation of DevelopmentalStatus (PEDS) at 6-month,12-month and 18-monthwell-child checks in a birthcohort. BMJ Open 2016;6:e012144. doi:10.1136/bmjopen-2016-012144

    ▸ Prepublication history forthis paper is available online.To view these files pleasevisit the journal online(http://dx.doi.org/10.1136/bmjopen-2016-012144).

    Received 5 April 2016Revised 12 July 2016Accepted 19 August 2016

    For numbered affiliations seeend of article.

    Correspondence toDr Susan Woolfenden;[email protected]

    ABSTRACTObjectives: Early identification of developmentalvulnerability is vital. This study aimed to estimate theprevalence of moderate or high developmental risk onthe Parents’ Evaluation of Developmental Status(PEDS) at 6-month, 12-month and 18-month well-childchecks; identify associated risk factors; and examinedocumentation of the PEDS at well-child checks.Design, participants: A prospective birth cohort of2025 children with 50% of those approached agreeingto participate. Demographic data were obtained viaquestionnaires and linked electronic medical records.Telephone interviews were conducted with parents tocollect PEDS data.Primary and secondary outcomes: Multiplelogistic regression analyses identified risk factors formoderate or high developmental risk on the PEDS. ACumulative Risk Index examined the impact of multiplerisk factors on developmental risk and documentationof the PEDS at the well-child checks.Results: Of the original cohort, 792 (39%) had 6-month, 649 (32%) had 12-month and 565 (28%) had18-month PEDS data. Parental concerns indicatingmoderate or high developmental risk on the PEDS were27% (95% CI 24 to 30) at 6 months, 27% (95% CI 24to 30) at 12 months and 33% (95% CI 29 to 37) at18 months. Factors associated with moderate or highdevelopmental risk were perinatal risk (OR 12 months:1.7 (95% CI 1.1 to 2.7)); maternal Middle Eastern orAsian nationality (OR 6 months: 1.6 (95% CI 1.1 to2.4)), (OR 12 months: 1.7 (95% CI 1.1 to 2.7)); andhousehold disadvantage (OR 6 months: 1.5 (95% CI1.0 to 2.2). As the number of risk factors increased theodds increased for high or moderate developmental riskand no documentation of the PEDS at well-child checks.Conclusions: Children with multiple risk factors aremore likely to have parental concerns indicating

    developmental vulnerability using the PEDS and forthese concerns to not be documented.

    Note that the Child Health Nurses in thispaper that are referred to are called Childand Family Health Nurses in the State inAustralia where this research was undertaken.

    BACKGROUNDAlthough ∼4% of Australian children startschool with an identified developmentaldisorder, a further 18% exhibit subtlerdevelopmental difficulties (developmentalvulnerability)—lacking the necessary skills to

    Strengths and limitations of this study

    ▪ This is the first study to examine the impact ofcumulative risk on developmental vulnerability inchildren under 2 years in an area of socio-economic disadvantage and cultural diversity.

    ▪ This is the first study to examine the impact ofcumulative risk on documentation of the PEDS at6-month,12-month and 18-month well-childchecks.

    ▪ Strength of this study was the use of datalinkage with the mother and child’s electronicmedical record.

    ▪ Significant loss of follow-up of mothers andinfants from the time of recruitment at birth tothe 18-month follow-up.

    ▪ Maternal mental health was unable to be exam-ined due to missing data in the electronicmedical record (EMR).

    Woolfenden S, et al. BMJ Open 2016;6:e012144. doi:10.1136/bmjopen-2016-012144 1

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  • flourish in formal education.1 Children experiencingthese vulnerabilities typically remain unidentified priorto starting school, and hence, are unlikely to havereceived support to address their needs. These inequal-ities in early childhood development (ECD) can worsenwith increased risks of school failure, unemployment andadult mortality and morbidity.2–4 Timely access to earlyintervention through effective early identification ofchildren who are developmentally vulnerable, presentsan invaluable opportunity to address and close the‘ECD gap’.4 5

    Developmental surveillance is one mechanism thathas been proposed to facilitate earlier identification ofdevelopmental vulnerability and improved access to ser-vices. It is defined by the National Health and MedicalResearch Council of Australia (NH&MRC) and theAmerican Academy of Paediatrics (AAP) and involves:1. Ongoing contact of families and children within a

    universal system;2. Health professionals trained in child development

    and health promotion;3. Monitoring and responding to developmental con-

    cerns over time from infancy to the preschoolperiod.5 6

    In Australia, state departments in New South Wales(NSW), Victoria and Western Australian have implemen-ted universal developmental surveillance programmes.These programmes use the Parents’ Evaluation ofDevelopmental Status (PEDS) as a standardised tool in thechild’s personal health record (PHR) to elicit parentalconcerns and identify developmental vulnerability at the6-month, 12-month, 18-month, 24-month, 36-month and48-month well-child checks.7–9 The PHR is given to allparents in NSW after the birth of a baby. It records thechild’s health, illnesses, injuries, and growth and devel-opment as well as immunisations. The PHR is a toolthat facilitates communication between parents andhealthcare professionals and it is used by parentsand health professionals to document and track a child’shealth, growth and development over time. The PEDScovers expressive and receptive language, fine and grossmotor skills, behaviour, socialisation, self-care and learn-ing. It is recommended that the PEDS questionnaire becompleted by parents and then discussed at the well-child check by the primary healthcare provider (a childhealth nurse or general practitioner (GP)). An estimateof developmental vulnerability (‘high’, ‘moderate’,‘low-risk but concerned/elevated risk for mental healthproblems category’ or ‘no developmental risk’) isderived from the parental concerns and a clinicalpathway of counselling and monitoring of the areas ofconcern, further screening, assessment and/or earlyintervention is recommended—commensurate with thelevel of risk. In the USA, the PEDS has a reported sensi-tivity of 91–97% and specificity of 73–86% for detectingchildren at moderate or high developmental risk.10

    A recent systematic review demonstrated that approxi-mately one-third of parents globally have concerns on

    the PEDS that indicate moderate or high developmentalrisk.9 Male gender, low birthweight, poor child health,poor maternal mental health, low family socioeconomicstatus (SES) and minority ethnicity were associated witha higher prevalence of parental concerns indicatinghigh developmental risk on the PEDS.9 There was emer-ging evidence to suggest a dose response relationshipbetween the number of risk factors and developmentalrisk on the PEDS.9 In addition, in the USA, the greaterthe number of risk factors experienced by the child andtheir family, the more likely the child was to not haveaccess to comprehensive health services.11 However, onlythree of the studies in this systematic review wereAustralian studies, and of these, none examined devel-opmental risk in the first 18 months of developmentalsurveillance. In addition, none of the studies in thereview have examined how the collection of this PEDSdata is documented in the PHR.9

    The aim of this study was to estimate the prevalence ofparental concerns indicating moderate or high develop-mental risk on the PEDS at 6-month, 12-month and18-month well-child checks in a culturally diverse andsocioeconomically disadvantaged area of NSW, and toidentify associated child, parent, family and neighbour-hood factors. The focus on the first and second years oflife is particularly important to promote earlier identifi-cation and intervention of developmentally vulnerablechildren. In addition, to provide results that are relevantto service development, the documentation of the PEDSin the PHR at the 6-month, 12-month and 18-monthwell-child checks was also examined.

    METHODSParticipants and settingThe ‘Watch Me Grow’ (WMG) study was designed toevaluate the feasibility, accuracy, barriers and enablers ofthe current developmental surveillance systems in SouthWestern Sydney—an area of significant social disadvan-tage located about 35 km from the Sydney central busi-ness district.12 A key component of the WMG study wasthe establishment of a longitudinal birth cohort. TheWMG study protocol, recruitment methods, representa-tiveness and baseline risk factors have previously beenreported.12 13 In summary, the WMG cohort consisted of2025 parent–infant dyads recruited at birth, that wasbroadly representative of the culturally diverse andsocially disadvantaged local population it sampled.13 Ofthese 2025 participants enrolled in the WMG study atbirth, 1078 (53%) were able to be contacted at 6 monthsby phone, of which 1052 consented to continue (52%),26 withdrew (1%) and 792 (39%) had PEDS data avail-able. At 12 months, 875 (43%) were able to be contactedby phone, of which 857 consented to continue (42%), 18withdrew (1%) and 649 (32%) had PEDS data available.At 18 months, 671 were able to be contacted by phone(33%), of which 632 consented to continue (31%), 39withdrew (2%) and 565 (28%) had PEDS data available.

    2 Woolfenden S, et al. BMJ Open 2016;6:e012144. doi:10.1136/bmjopen-2016-012144

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  • Measurement and procedures—measurement of child,parent, family and neighbourhood factorsThe impact of risk factors on developmental vulnerabilitywas examined using the bioecological framework14 bymeasuring child, parent, family and neighbourhoodfactors available in the WMG cohort and demonstrated inthe recent systematic review to be associated with parentalconcerns, indicating high developmental risk on thePEDS.9 Risk factor measures and the method and timingof their collection in the WMG cohort are listed in table1. Data were self-reported by parents using baseline and18-month follow-up questionnaires specifically designedfor this study. These questionnaires were derivedfrom the extant literature and examination of question-naires from other Australian cohort studies, such asthe Longitudinal Study of Australian Children.15 16

    Additional information routinely collected as part of themothers’ and babies’ antenatal and postnatal care wasobtained through data linked with their electronicmedical record (EMR). Socio-Economic Indexes forAreas (SEIFA) data for the families were calculated usingthe suburb of residence obtained from data linkages togive information on neighbourhood factors. SEIFA is acomposite of indicators that rank geographic areasaccording to their socioeconomic characteristics basedon five-yearly census data of people, families and dwell-ings across Australia. The lowest SEIFA decile indicatesthe highest neighbourhood disadvantage.17

    Measurement of parental concerns indicating moderateand high developmental risk on the PEDSAt each 6-month, 12-month and 18-month follow-up,parents recruited at baseline into the study were

    contacted by phone and asked (through a standardquestionnaire developed by the researchers) whetherthey had taken their child for the recommended well-child checks as outlined in their child’s personal healthrecord (PHR), which health service(s) they used andwhether a standardised screening tool (the PEDS) hadbeen completed. The procedure for this was as follows:parents were asked by researchers whether they hadtaken their child for the well-child checks with the ques-tion: “Since your baby was 6 (12 or 18) months of age, haveany checks in the ‘Blue Book’ [Personal Health Record] beendone at a GP or baby clinic (e.g. Early Childhood HealthCentre)?” Parents were then asked to turn to the appro-priate page in the PHR to ascertain whether the PEDShad been documented either by the parent or primaryhealthcare provider, and what the results were (table 1).PEDS data were recorded verbatim by the researcherswhen it was available. Alternatively, if it was not com-pleted, researchers administered the missing PEDS overthe phone for the well-child check that was due.As demonstrated in a previous paper, PEDS data were

    more likely to be collected in the 6-month, 12-monthand 18-month groups of families at greater householdand/or neighbourhood advantage.13 Imputation of thismissing outcome data was not possible, because thePEDS results at 6 months may be quite different to thoseat 18 months, due to the changing developmental skillsneeded as children age and loss to follow-up was notrandom.18 As complete PEDS data over three time pointswere available for only 314 children, we elected to treateach follow-up period as a discrete group and thusexamine the results for the 6-month, 12-month and18-month groups separately, rather than across time.

    Table 1 Baseline and follow-up measures

    Measure Instrument/source Birth 6 months 12 months 18 months

    ChildGender, gestational age, birthweight EMR (birth) XAdmission special care nursery (SCN) orneonatal intensive care unit (NICU)

    EMR (postnatal) X

    ParentPartner status (mother) Survey XMaternal education Survey (LSAC adapted15) XFather employed Survey X XNationality EMR (demographic) X

    HouseholdPrimary language Survey XAnnual income Survey (LSAC adapted15) X X

    NeighbourhoodSEIFA decile 1 (most disadvantaged) bysuburb17

    EMR (demographic) X

    Service UseHad well-child check Parent report X X XParental concerns indicatingdevelopmental risk using the PEDS10

    PHR X X X

    EMR, electronic medical record; LSAC, Longitudinal Survey of Australian Children; PEDS, Parents’ Evaluation of Developmental Status; PHR,personal health record; SEIFA, Socio-Economic Indexes for Areas.

    Woolfenden S, et al. BMJ Open 2016;6:e012144. doi:10.1136/bmjopen-2016-012144 3

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  • Statistical analysisBased on the PEDS scoring, parental concerns were cate-gorised as indicating—high, moderate or low/no devel-opmental risk. Estimates of the prevalence of parentalconcerns on the PEDS indicating moderate or high riskwere calculated with corresponding 95% CIs. Univariatelogistic regression was used to test for associationsbetween moderate or high developmental risk at eachcheck and child, parent, family and neighbourhoodfactors.Multivariate regression was used to model the associ-

    ation between parental concerns indicating moderate orhigh developmental risk and factors noted in the uni-variate logistic regression to be significant (p

  • NICU) (OR: 1.8 (95% CI 1.1 to 2.8)), and maternalMiddle Eastern nationality (OR: 2.0 (95% CI 1.2 to3.3)). Using composite measures perinatal risk (OR: 1.6(95% CI 1.0 to 2.4)) and maternal Middle Eastern orAsian nationality (OR: 1.6 (95% CI 1.1 to 2.4)) were sig-nificant (p

  • Table 3 Risk factors for moderate or high developmental risk in the 6-month group

    Risk factor N (n)%Whole sample

    Total792 (100)

    High21 (2.7%; 95%CI 1.7 to 4.1)

    High/moderate215 (27.2%; 95%CI 24.2 to 30.4)

    Low/no577 (72.9%; 95%CI 69.6 to 75.8)

    unadjusted OR(high/moderate vs low/no)− p Value

    Child levelMale gender 344 12 (3.5) 97 (28.2) 247 (71.8) 1.1 (0.8 to 1.4) 0.8Low birthweight (

  • Table 4 Risk factors for moderate or high developmental risk in the 12-month group

    Total High High/moderate Low/no unadjustedOR (high/moderatevs low/no) p Value

    Risk factor N (n)%Whole sample

    649(100%)

    34 (5.2%; 95%CI 3.8 to 7.3)

    174 (26.8%; 95%CI 23.6 to 30.4)

    475 (73.2%; 95%CI 69.6 to 76.5)

    Child levelMale gender 281 16 (5.7) 80 (28.5) 201 (71.5) 1.3 (0.9 to 1.8) 0.2Low birthweight (

  • Table 5 Risk factors for moderate or high developmental risk in the 18-month group

    Risk factor N (n)% Total High High/moderate Low/noUnadjusted OR(high/moderate vs low/no) p ValueWhole sample 565 (100)

    29 (5.1% 95%CI; 3.6 to 7.3)

    184 (32.6%; 95%CI 28.8 to 36.6)

    381 (67.4%; 95%CI 63.5 to 71.2)

    Child levelMale gender 244 12 (4.9) 87 (35.7) 157 (64.3) 1.3 (0.9 to 1.9) 0.1Low birthweight (

  • paediatrician) for the well-child check, compared with83–91% of children who had seen a child health nurse.

    Cumulative Risk Index and moderate or highdevelopmental risk and documentation of the PEDS in thePHRTable 7 shows increased odds of being at a moderate orhigh developmental risk with increasing number of riskfactors in the 6-month group (p

  • was somewhat surprising was that this cumulative effectwas evident as early as infancy, a time of enormousneurobiological and neuroanatomical adaptation andvulnerability. Studies examining the dose response rela-tionship between the number of risk factors and devel-opmental vulnerability as indicated by the PEDS haveincluded young children in their sample, but none havesolely focused on children under 2 years of age.11

    The high level of parental concerns, overall in eachgroup demonstrated in this study, supports a comprehen-sive universal service response to support parents andpromote ECD. Services need to be enhanced, in particu-lar, for those children at perinatal risk and for familiesfrom culturally and linguistically diverse (CALD) back-ground and/or socioeconomically disadvantaged popula-tions using an approach of proportionateuniversalism.31 32 This is in keeping with recent state/federal policy initiatives in NSW/Australia that aim topromote parental health literacy around ECD to ensure adeeper understanding of what to expect at different ages,when to be concerned and where to seek help.33 34

    In our study, the vast majority of parents reportedseeing a primary healthcare provider for a well-childcheck at 6, 12 and 18 months—as outlined in theirPHR, although this dropped to 82% for the 18-monthcheck. However, at best, only 50% of children who saw aGP/other non-child health nurse for their well-childcheck had PEDS documentation in the PHR. This is con-cerning given that the PHR is an important tool forparents and healthcare providers to document anddiscuss a child’s health over their multiple health servicecontacts in the early years. The odds of lack of PEDSdocumentation increased with multiple risk factors.Thus, children and families with multiple risk factors aremore likely to experience developmental vulnerability,and their developmental vulnerability is less likely to bedocumented and perhaps less likely to identified at well-child checks. However, we cannot rule out its identifica-tion through history, observation and another

    developmental surveillance tool that hasn’t been docu-mented in the PHR. Recent quantitative and qualitativeresearch has identified a number of factors that werebarriers to early identification of developmental vulner-ability, including lack of parental, GP and communityknowledge around ECD and developmental surveil-lance.31 35 Thus, there is work to do with GPs and othernon-child health nurse services to enhance the consist-ency of their early identification of developmental vul-nerability through developmental surveillance practiceusing evidence-based tools.

    LimitationsAlthough the WMG birth cohort is broadly representativeof the CALD population from which it is sourced,13 a sig-nificant limitation to the study is the lack of follow-up ofsome mothers and infants from the time of recruitment atbirth to the 18-month follow-up, thus impacting on theapplicability and power of the study. There were difficultiescontacting participants by telephone in a timely manner,which was compounded by changes to contact details ofthe families. Multiple methods of contact were used byresearch staff, including mobile phones, emails and land-lines. This significant loss to follow-up limited any longitu-dinal analysis of the prognostic impact of parentalconcerns indicating developmental vulnerability over time.To address the significant challenge in retaining a cohortat each follow-up point, there needs to be a more effectivemethod of longitudinal follow-up than phone calls which,in the WMG, necessitated significant manpower resourceswith a disappointing result. Adequate resources for a studydirector, ongoing participant engagement strategies, suchas collaborative research planning, home visiting, studyinformation days and community presentations, are allstrategies that have been used with success in otherAustralian cohort studies.15 16 36

    In this study, composite measures of perinatal risk andhousehold disadvantage were used to reflect the differ-ent components of perinatal risk and wealth on

    Table 7 Cumulative risk for moderate or high developmental risk/documentation of PEDS in the PHR at well-child check* †

    Number ofrisk factors(RF)

    Moderate or highdevelopmentalrisk

    PEDS notdocumentedin PHR

    Moderate or highdevelopmentalrisk

    PEDS notdocumented inPHR

    Moderate or highdevelopmentalrisk

    PEDS notdocumented inPHR

    6-monthgroup(p

  • developmental vulnerability and to avoid potential col-linearity in the regression models.20 There is somedebate around the use of composite indicators. While anumber of longitudinal studies have used this approach,such as the Longitudinal Study of Australia’s Children,37

    the recent AAP policy regarding measurement of SESdoes not recommend their use.38

    Another limitation in this study is that the measure ofrace/ethnicity used in the WMG study only reflectsmaternal nationality as reported by mothers at the timeof antenatal check in. This may not be an accuratereflection of the ethnic and cultural milieu at home,which is influenced by multiple factors, including pater-nal and maternal backgrounds and country of origin.The WMG study did not specifically measure accultur-ation, but the AAP suggests that language spoken athome is a valid proxy measure for acculturation.38

    Maternal mental health was unable to be examined—due to missing data in the EMR, which requires futureexamination by service providers around whether theEdinburgh Depression Scale is being uniformly adminis-tered and its data recorded.In addition, the PEDS is not a comprehensive devel-

    opmental assessment that acts as a ‘gold standard’, it isa developmental surveillance tool only. Some childrenidentified as developmentally vulnerable by parentalconcern on the PEDS will be false positives.10 39 Theparental concerns may reflect, for example parentalstress due to poverty, the anxiety of having a child whowas preterm or underlying mental health issues. Thisstill warrants a system response in terms of support,advice and monitoring. In addition, the PEDS outcomedata were collected in two different ways in this study:the first from PEDS results documented in the PHR,and the second from the PEDS being administered overthe phone by a researcher if there was no documenta-tion. Although the PEDS has been administered exten-sively by both methods in the research,9 the fact thatthe PEDS was collected over the phone for a significantproportion of participants, rather than during a well-child check in the primary healthcare setting, limits theapplicability of these findings to clinical practice.The impact of multiple risk factors was examined in

    this study using a Cumulative Risk Index of individualand composite child, parent and family risk factors. Thisis a robust way of examining the impact risk factors in abioecological model of child development in longitu-dinal and cross-sectional studies, and suits smallersample sizes. Its advantage is its simplicity and the factthat the ‘dose’ of a number of risk factors can be investi-gated. However, it does not allow for investigation of riskfactors that are mediators and moderators. In addition,all risk factors are given equal weight which may or maynot reflect ‘real life’.26

    ConclusionThe prevalence of parental concerns on the PEDSindicating moderate or high developmental risk

    increases with multiple risk factors. This study hasillustrated the impact of cumulative risk on the devel-oping child as early as infancy. We need to take a lifecourse approach in service planning from conceptiononwards to address the inequity in ECD to positivelyimpact the developing brain when it is most likely tobe beneficial. Each stage of integrated service deliv-ery needs to build on to the next—a form of ‘cumu-lative buffering’ to address the cumulative risksidentified here.

    Author affiliations1Sydney Children’s Hospitals Network, Sydney, New South Wales, Australia2University of New South Wales, Sydney, New South Wales, Australia3Academic Unit of Child Psychiatry, South West Sydney Local Health District(AUCS), Sydney, New South Wales, Australia4School of Psychiatry & Ingham Institute, University of New South Wales,Sydney, New South Wales, Australia5Ingham Institute for Applied Medical Research, Sydney, New South Wales,Australia6Epidemiology Group, Healthy People and Places Unit, South Western SydneyLocal Health District, Sydney, New South Wales, Australia7School of Public Health and Community Medicine, University of New SouthWales, Sydney, New South Wales, Australia8School of Nursing and Midwifery, University of Western Sydney, PenrithSouth DC, New South Wales, Australia9Olga Tennison Autism Research Centre, La Trobe University, Melbourne,South Australia, Australia10Early Years Research Group, Ingham Institute, Sydney South West LocalHealth District, Sydney, New South Wales, Australia11Research School of Psychology, The Australian National University,Canberra, Australian Capital Territory, Australia12Community Paediatrics, South Western Sydney Local Health District,Sydney, New South Wales, Australia13School of Psychiatry, University of New South Wales, Sydney, New SouthWales, Australia14Sydney South West Local Health District, Australia, Sydney, New SouthWales, Australia15Office of Kids and Families (NSW Health), North Sydney, New South Wales,Australia16Department of Paediatrics, University of Melbourne, Melbourne, SouthAustralia, Australia17Developmental Medicine, Royal Children’s Hospital, Melbourne, SouthAustralia, Australia18Murdoch Children’s Research Institute, Melbourne, South Australia,Australia

    Acknowledgements The authors thank Professor Margot Prior for hercontribution to the development of the research proposal, the Child andFamily Health Nurses (CFHN) in the Liverpool/Fairfield/Bankstown areas andCFHN Managers Trish Clarke, Victoria Blight and Wendy Geddes, the staff ofthe postnatal wards at Liverpool and Bankstown hospitals, the staff at SouthWestern Sydney Local Health District (SWSLHD) IM&TD., as well as researchstaff, including Amelia Walter, Trinh Ha, Susan Harvey, Nicole Lees, OliviaWong, Laura Nicholls, Banosha Yacob, Cherie Butler, Feroza Khan, JanelleCleary, Mary Ha, Snehal Akre and Van Nguyen.

    Collaborators ‘Watch Me Grow’ Study Group: Butler C, Cleary JA, Deering A,Descallar J Einfield SL, Garg P, Ha MT, Ha M, Harvey S, Matthey S, McKenzie A,Nguyen V, Nicholls L, Shine T, Short K, Silove N, Walter A, Wong O, Yakob B.

    Contributors SW, VE, KW, BJ, CD, EM, JE, RC and DB developed the studydesign and participated in the preparation of the manuscript. EA, AH and BOprovided assistance in developing the study protocols and databases, andparticipated in manuscript preparation. LK, AH and AMK gave critical inputinto the data analysis and manuscript preparation. All authors have read andapproved the content of the manuscript.

    Woolfenden S, et al. BMJ Open 2016;6:e012144. doi:10.1136/bmjopen-2016-012144 11

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  • Funding This study (APP 1013690) was funded by the National Health andMedical Research Council (NH&MRC) of Australia, through a partnershipgrant with the New South Wales Department of Health, Kids and Families andin-kind support from University of New South Wales, La Trobe University,SWSLHD and Sydney Children’s Hospital Network.

    Competing interests None declared.

    Ethics approval The study was approved by the Human Research EthicsCommittees of SWSLHD and the University of New South Wales (HREC/11/LPOOL/281).

    Provenance and peer review Not commissioned; externally peer reviewed.

    Data sharing statement The unpublished data are available to all members ofthe Watch Me Grow group and coresearchers if a research application is putinto the WMG governance group. The data are de-identified and kept in apassword secured server system at the Academic Unit of Child PsychiatrySouth West Sydney Local Health District (AUCS), Australia School ofPsychiatry and Ingham Institute, University of New South Wales, Australia.

    Open Access This is an Open Access article distributed in accordance withthe Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license,which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, providedthe original work is properly cited and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/

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    Prevalence and factors associated with parental concerns about development detected by the Parents’ Evaluation of Developmental Status (PEDS) at 6-month, 12-month and 18-month well-child checks in a birth cohortAbstractBackgroundMethodsParticipants and settingMeasurement and procedures—measurement of child, parent, family and neighbourhood factorsMeasurement of parental concerns indicating moderate and high developmental risk on the PEDSStatistical analysis

    ResultsParticipants and their characteristicsPrevalence of parental concerns on the PEDS indicating moderate or high developmental riskFactors associated with parental concerns indicating moderate or high developmental risk on univariate logistic regressionFactors associated with parental concerns indicating moderate or high developmental risk on multivariate logistic regressionDocumentation of the PEDS at the 6-month, 12-month and 18-month well-child checkCumulative Risk Index and moderate or high developmental risk and documentation of the PEDS in the PHR

    DiscussionLimitationsConclusion

    References